I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Friday, November 27, 2015

Not traditional, but thankful

I woke up this morning, on Thanksgiving, under a beautiful quilt made by a woman I have never met. She is from Manhattan, a friend of a friend, who ironically lives only blocks from Memorial Sloan-Kettering, a hospital that I spent many months in. Today, I find myself living in a different hospital, listening to helicopters as they land on the roof. These flights remind me that someone is having a much worse day than me.

My son has relapsed with AML. I have been medically focused for the past several months as we work to get Brent's leukemia under control. We have tried a targeted therapy, an epigenetic therapy, radiation and just this week, a stem cell transplant with extra T-cell lymphocytes. I am grateful for my time here with Brent, despite the geography. I am thankful that my son Alex was able to donate cells again.

Our family has been under tremendous strain, as we are physically divided. We have been separated before, and I try to focus on how our current distance is not nearly the challenge that it has been in the past. We are near to our family and friends, able to swap parents and more easily arrange sibling visits. We are not 500 miles apart. While love knows no boundaries, embracing your children on occasion helps to reinforce this idea.

My thoughts are scattered and my mind only travels a few days in advance. We must wait to see if Alex's stem cells engraft in the next two weeks. In the meantime, I am told that every day without a 'catastrophic event' like infection, is a good day. I try to make these days truly good whenever Brent is feeling up to it. He is incredibly strong and equally kind.

Brent's doctors are thinking creatively about how to best help him. They are searching for answers and caring for our family. We balance family and medicine. We take each step, full of prayer and full of gratitude, knowing that our team is working very hard. There is no clear path, and there are no obvious answers, but they travel the wilderness with us nonetheless. They sacrifice time with their families on Thanksgiving, to help mine.

This holiday is a time to pause and count our blessings. The Ramers celebrated Thanksgiving last week in order to be together as a family, and not delay this treatment. While we marked the day early, the spirit of gratitude is fairly constant. Our blessings, I believe, outweigh our challenges. This is really saying something about our blessings, because our challenges are many.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.